Sunday, October 7, 2012

Finding My Patient Voice: My Adventures At Stanford Medicine X

This is the third of a series of blog posts in which I will recount my adventures at Stanford's Medicine X, Conference: An experience which has changed my life, and I will not soon forget. :-)

Friday had come and gone with a massive amount of information, stories, and knew technologies featured in a relatively small amount of time. To be honest, I'm still dissecting a lot of the information, and I'm grateful for the live-streams, and videos, which I can always use as a reference.

I'm also grateful for the dignity of finding one's bearings. Once we find those bearings, we regain a certain sense of confidence in ourselves, and situations, without which we may falter momentarily. Finding my bearings came in the form of chit chatting throughout the day with others (encouraged by having to QR scan badges, and introduce ourselves), and by way of having dinner every evening with new friends. It was the validation I needed, really. A validation that comes from others who aren't just similar to you, in their struggles, but who also laugh at your jokes, and are probably just as irreverent as you! I made some great friendships I won't soon forget. I felt human... an empowered adult, in her own right, without pretense, instead of an awkward child, sitting at the grown-up table.

Okay, so they didn't call it that. They just called it "Day 2." But "Day 2" was ALL about patient dignity, in my mind... or well, the indignities patients have had to suffer for the sake of getting much needed medical treatment for themselves, and their loved ones.

Being a patient with chronic illness often leaves you feeling like cattle, simply going through a 'machine' where you have no face, no back story... no humanity: just a being going through the system, the motions, the things put in place to achieve an outcome, a quota, or a financial goal, etc. And oftentimes, it matters not how well off you are, who you are, how famous you are... to be reduced to nothing.

Mr. Graves is an American architect, and Professor of Architecture at Princeton. You might not immediately know who he is, but he's more often known and identified for his creative designs for Target stores.I love Michael Graves. Heck, I have an alarm clock by him that I *adore.* I've had that thing for 10 years. It's easy to program, very intuitive, and with two separate alarms, it has allowed me to keep ever changing, weird sleep schedules. Best of all, it's beautiful to behold.

But I digress... Michael Graves is an immensely talented human being. A designer, and an artist, in his own right. An optimist, and humorist. He was a person going about his life when chronic illness came striking at his door... In 2003, he became ill with a virus that spread to his spine, and left him paralyzed from the waist down. He recounts his initial symptoms, and his horrific experiences at the hospitals where he received emergency, and therapeutic services. It was his very traumatic, and dehumanizing experiences that gave him insight and a new passion to redesign the hospital room, and create bacterial resistant, patient-intuitive furniture... I could recount his story, but I don't think I'd do it enough justice... so you owe yourself the 40 minutes or so to watch his video below, complete with pictures of some of these rooms, and the work he's doing.

Most notably, you can detect a hint of sadness in Graves' account -- the sort of sadness of the self realization of not just his own vulnerability, of being at the mercy of someone else... and with little resources to make it through the day, but of others' vulnerabilities, as well. At one point, Mr. Graves recounts how CBS was interviewing him when he was in one of the therapy rooms, and they asked him "Michael, what do you think of this room?" to which he replied "It's far too ugly for me to die here."

I can't watch her story without crying. I just can't. Probably one of the most passionate speakers at Medicine X, Regina Holliday is just a beautiful soul. Regina is Artist in Residence for Stanford Medicine X, and she uses her paintings to express the reality of the health care system, the need for clarity, communication, and accessibility to data and patient records, as well as the injustices and indignities suffered by the patient... including her own grieving process, and her own indignities. Regina speaks creatively, and passionately about patient's rights, and healthcare reform, and you can see she has invested much of herself in this fight through her national Walking Gallery project.

"You must look at the human face to determine what to do next ... "You must have patient participation in data and access, or you will never get the true story of care."

We must couple people's data with their stories, and never forget, or give up.

Most telling is the story of Regina pleading with her husband's doctor for his data, wanting desperately to know what was wrong with him... but being belittled, and dehumanized for doing so. "I don't like people that research online ... I'm the one with the medical degree." The picture she painted for that one event reflects a thousand emotions of one moment in time... a thousand emotions of desperation, trepidation, and ego. A thousand emotions we have probably felt, as patients, at one moment or another... but like scolded children, may feel a certain pang of shame to recount.

How do we change this reality? We write letters, we speak up, we stand up... we get engaged. We don't need partnership FOR, but WITH.

You must take us as we are... for we will never, ever keep quiet. We will blog it, twitter it, shout it from the rooftops...

The Crux of Patient Centered Emerging Technologies

Interspersed with all these patient stories, Medicine X had also presented a diverse array of start ups, ideas, visions for the future, etc, for tackling confusing every day health tasks, or complex medical problems or processes. Whether it be shopping for your groceries (with USDA based guidelines, of course... something I will never use as a low carber), applications to help patients get in touch with clinicians at the wee hours of the morning, gadgets to help quantify one's quality of sleep (something I definitely want to use) or one's vitals during exercise, or applications to help simplify the potentially embarrassing scenarios of taking a urinary or fecal incontinence history... even online gaming communities to help scientists solve the puzzles of RNA sequence folding. Medicine X showcased it all.

They also discussed various obstacles to technology advancement, such as getting governments and current clinicians on board, the issues presented by HIPAA as well as personal privacy concerns, the 'realisticness' of expectations on the patient (will many of us really want to self quantify to some of the levels seen, and how well will that go over with feelings of exhaustion, guilt, etc.), and of course... accountability. Getting patients to actually DO, and ACT upon the new information gained.

This last one is a big concern in patient advocacy, as well as in the medical industry... but it is where we can enter a sort of murky territory: how far do we help the patient, without patronizing them, or minimizing their disease? I was a bit annoyed to see that some of the innovators focused on obesity and diabetes (generalized for the audience, without explanation of types) as the example diseases for whatever initiative was presented. One of the presenters (on Day 3) went as far as calling type 2 diabetes 'the plague of humanity' (never mind that he could of stood to lose about 40-50 lbs himself, and therefore heeded his own warnings.)

I don't want to be a real negative bitch here... but there's really nothing more dehumanizing than someone calling your illness with which you have to live day in, and day out, as the 'plague of humanity.' Whatever shall I do? Shall I wear a D scarlet letter on my sweater? Shall I hide in the closet? Shall I find ways to hide the fact that Polycystic Ovarian Syndrome keeps me very overweight, and that my weight yo-yos off and on, despite best efforts, and low carbing? I wonder...

Among other pet peeves, one speaker simplified diabetes as something that they 'proved' could be easily prevented -- even though the patients participating in his initiative already had pre-diabetes (and most likely a 40-50% beta cell loss), completely (of course, and probably out of ignorance) ignoring the whole questions of 'delaying' versus preventing, and 'remission' versus cure. All big topics I can't being to cover here... but suffice to say that despite lifestyle choices, many still go right on to developing diabetes, so lifestyle choices really only help us REDUCE risk of any illness; they have not, in our history as people, ever inoculated ANYONE against ANY illness... and then advocates like me have a very hard time bringing peace of mind, and healing, to people who were told they were in the clear. At the end of the day, we ALL need to have a healthier lifestyle -- not just diabetics.

But, probably the worst offender, one innovator began his speech discussing type 1 diabetes... immediately jumping into scary statistics about diabetes (which vary greatly, depending on who you ask -- and were for type 2, not type 1) and intermixing those statistics with obesity statistics (which is really not 100% correlated to diabetes, otherwise all obese people would be diabetic, and is a disease in and of itself). To top off his confusing non sequiturs, he then went on to make jokes about why people in Great Britain were so overweight, and with diabetes, "so if you've ever had a British breakfast, you'll understand," and ended his session of explaining why we need data, and more data... because we don't want to live in a world where obesity and diabetes are prevalent. Really? Honestly, it's not that disease is something to be wanted... but the benefit of having access to data is not really summed into a war against obesity and diabetes, it is summed into patient empowerment and action toward their conditions. THAT is what he should have said. Diabetes does not define me, but it is my REALITY, and as innovators, scientists, clinicians, persons engaged with patients... you had better damn well respect my reality... for when you don't do so, that is an indignity you heap upon me.

You had better work on
your bedside manner NOW. :)

And the funny thing of it is that I liked their initiatives! I really did! I liked their rationales, and their analogies... their applications. I *want* to support them... but they forgot my dignity. They forgot I am more than data. I am a FACE behind the data.

So, at the end of Day 2 of Medicine X... I found my patient voice. And I thank them for that.

I found my voice, my bearings, and my dignity... and I got up, and I spoke out. Yes, on the microphone. Yes, I brought unwanted attention on myself. But, I thought "If I say nothing, now, I don't deserve to be a blogger... I don't deserve to claim I am angry about these things... I don't deserve to be an advocate... and I didn't start my blog to play nice." My apologies to those who paid to have me there.

The last few minutes of Day 2... I ended my day, with my knees shaking, my emotions on my sleeve, my heart rate through the roof, my courage being tested, and reminding the world, with a steady voice... that I am not a fat blob, having English breakfasts, who gave herself diabetes. I AM A HUMAN, AND I HAVE DIGNITY. I am NOT the plague of humanity.

I didn't expect people to get up and clap. I didn't expect all the attention, and comments, and support I've gotten since. I only went there to learn, and listen... not to make myself "famous," somehow. (Or infamous, really...) But I just said what I had to say. I'd probably do it again, too.

Is there some diabetes that is preventable? You know... I don't think anyone FULLY knows the answer to that. BUT SO WHAT? Does it mean I no longer deserve dignity if I do get it? If I "fail" to 'prevent' it? Should I now be excommunicated from the population at large? Should I be made as an 'example' to others? Should I be spoken of as a plague? As an unwanted thing in the world?

5 comments:

Thank you for speaking up. I've thanked you already on Twitter, but I am just so glad you stood up for us. People so readily forget that we are PEOPLE with FEELINGS. Not just, as you put it, "fat blobs" who got ourselves into this mess. Nothing any Type 2 that I've met has done is much more different and so much more dangerous than any other American. People have this idea of what the type 2 diabetic is, and unfortunately it's a bad idea and sometimes the people who are trying to help us just perpetuate these ignorant ideas.

I agree, it was well said - a show-stopping moment in the best sense of the term. Thanks for standing up for yourself and for changing the conversation that day (and for the rest of the lives of everyone who heard you).

Wow! I've spent tonight watching the MedX videos and saw your comment. All I can say is A-MA-ZING! That took a lot of courage and will make a difference for people living with diabetes. Anyone who was in that room or has watched the video since will think twice before making any insensitive comments about diabetes from now on. Thank you for being strong enough to speak up! Definitely a memorable moment!

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About This Peep

I am a Puerto Rican living in Iowa... A lover of white picket fences, photography, Winter days, peeps, and black cats. Through most of my life, I've struggled with poorly understood diseases, unfairness, and judgement. Life with Type 2 Diabetes, Polycystic Ovarian Syndrome, Hypothyroidism, Depression, and Carpal Tunnel, is NOT easy... But I'll try to shed some light, if you let me. I'm really not THAT angry; just some of the time.
While I share experiences that may be of help to many, what I share is merely a personal journey. This blog is not meant to diagnose or treat ANY condition. It is NOT medical advice. If at any time, you have serious questions about your health, or your care... please seek the advice of a medical professional.